Charles S Kamen1, Alison Alpert2, Liz Margolies3, Jennifer J Griggs4, Lynae Darbes4, Marilyn Smith-Stoner5, Megan Lytle2, Tonia Poteat6, Nfn Scout7, Sally A Norton2. 1. University of Rochester, Saunders Research Building, 265 Crittenden Blvd, Box 420658, Rochester, NY, 14642, USA. charles_kamen@urmc.rochester.edu. 2. University of Rochester, Saunders Research Building, 265 Crittenden Blvd, Box 420658, Rochester, NY, 14642, USA. 3. National LGBT Cancer Network, New York, NY, USA. 4. University of Michigan, Ann Arbor, MI, USA. 5. California State University San Bernardino, San Bernardino, CA, USA. 6. Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. 7. The Torvus Group, Beverly Hills, CA, USA.
Abstract
PURPOSE: Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care. METHODS: Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded. RESULTS: Five themes emerged. LGBTQ patients with cancer: (1) are affected by providers' LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization. CONCLUSIONS: LGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients' identities and identifiers, include chosen support people, provide care relevant to patients' gender identities, and address treatments' effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.
PURPOSE: Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care. METHODS: Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded. RESULTS: Five themes emerged. LGBTQ patients with cancer: (1) are affected by providers' LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization. CONCLUSIONS: LGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients' identities and identifiers, include chosen support people, provide care relevant to patients' gender identities, and address treatments' effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.
Entities:
Keywords:
Cancer; Gender identity; Health disparities; Sexual and gender minorities; Sexual orientation
Authors: Ash Alpert; Charles Kamen; Matthew B Schabath; Lauren Hamel; Julia Seay; Gwendolyn P Quinn Journal: J Clin Oncol Date: 2020-06-18 Impact factor: 44.544
Authors: Ulrike Boehmer; Jennifer Potter; Melissa A Clark; Michael Winter; Flora Berklein; Rachel M Ceballos; Kevan Hartshorn; Al Ozonoff Journal: J Cancer Surviv Date: 2021-04-14 Impact factor: 4.442
Authors: Ash B Alpert; Vikas Gampa; Megan C Lytle; Charlie Manzano; Roman Ruddick; Tonia Poteat; Gwendolyn P Quinn; Charles S Kamen Journal: Patient Educ Couns Date: 2021-03-10